Atypical Multiple Sclerosis

So May 23, 2008 was my last Cytoxan infusion.  Yeehaw! After ten months you no longer have two good weeks.  At about month six your body has had enough.  But you still must persevere because the situation demands it.  Your alternative is to do nothing, give up.  Watch your body, yourself, wither, weaken.  Watch your hubby, son watch you wither, weaken.  NOT AN OPTION!  NOT FOR ME!

Earlier, I mentioned my treatment plan called for twelve months of chemo, Cytoxan.  Unfortunately, my spasticity hasn’t improved.  In fact, after an unsuccessful round of Botox injections to my calves my docs and I determined that ITB (baclofen pump) is my best option.  My hips and torso are so spastic that I cannot bend, dress myself, reach over my head (to get into cabinets, to get dressed, etc.) or walk very easily.  The pain is very, very bad.

The Botox loosened my calves enough for my knees to bend, but the problem is my hips and torso don’t move.  See, Botox only works on one muscle. All my muscles from torso to feet are spastic.  I guess the question becomes “Then why try Botox?  Why not just have the pump implanted?”

Good questions.  Answer:  Insurance companies won’t approve the surgery until all other options are exhausted. That means that even though in December of 2007 when I first saw my neurophysiatrist and she told me the pump is what I need, I won’t get one until the end of July.  You can follow me through my journey with the baclofen pump by reading the “Chronicles of ITB Pump” posts.  

Basically, I stopped my chemo to get the spasticity under control.  I now follow up on Cellcept, which is an immunosuppressant. Cellcept is usually used for transplant patients as assurance that their body does not reject the implanted organ.  It is all used “off label” as a follow-up treatment for Multiple Sclerosis.